Hi, I am interested to make contact with others with PALB2. I was diagnosed in November 18 and I am currently at my 5 year point after Breast Cancer. Waiting patiently to be seen about the PALB2 as appointments are bit behind up here (morecambe Bay hopsital trust), and letter about going on high risk register seems to have got lost in the post from genetics team (groan). So what experience have others on here had once diagnosed for PALB2. So far I have:
Been told no need to alter treatment - just 20% increased risk for my lifetime of a recurrance and just need surveilance rather than surgery (I had lumpectomy in 2014 and I am reasonably content with that advice)
To be put on high risk register but not clear if that will be just mamograms or include MRI and Ultrasound (which I would prefer). I am aged 55 by the way - that might be relevant to this bit. I'm getting twitchy about being made to wait so long for a review from Breast Care team given diagnosis was 9 months back!!
No need for ovarian removal but I have ignored that advice because mum died of ovarian cancer so I am planning with surgeon to remove ovaries and tubes. That reduces risk to 0.01 percent which in my view is a no brainer (ovarian is not the way to die)
I have told about the increased pancreatic risk (only 1% increase) but been offered no scans or tests for that. My doctor says don't be fobbed off with blood tests for any of the above (they are notoriously unreliable she confirms) and the only way to see if Pancreas is ok is a full body scan every two years.
Anyone else got similar or contrary advice. (I've had a bit of advice too from Marc at Cambridge research who is top man in UK).
website facebook page PALB2 Warriers makes this PALB2 issue a whole lot more serious than we seem to be taking it in the UK - led by americans but becoming more worldwide audience on that page and it scares me to see the drastic action those ladies are all taking. Its fully hysterectomy and removal of breasts straight away as young as 25 years of age. Horrific!!